Michelle Sawicki

Hi Jackie! I didn't post on that thread because my story is already on the DINET website. It was interesting to read about all the rest of you out there, though. I second Jackie's thank-you to those who contributed to this post. I feel like I know you guys better because of it. Michelle

Congrats from me as well. Good luck with the ablation. Don't take this the wrong way, but I'm glad you didn't join us for good. Michelle

Hi Sue! Thanks for posting this. As a Michigander, I was curious about Pelosi. I'd always seen Dr. Russell at UofM. I'm happy to hear that the appointment went well and that you were happy. I know some docs are now questioning the use of pacemakers due to some recent research. See: http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=12734133 By the way, is Dr. Pelosi at Michigan State University or the University of Michigan? Again, great to hear the appointment went well. Michelle

Hi Tearose, I'm glad your tests came out okay. Having said that, I do hope your doctors can give you some type of explanation for your symptoms. For me, the "not knowing" was always the hardest part. I've been where you were describing, where you feel in awe of all that is around you. I remember taking quiet walks down our little country road in my "recovery year" (the year after I got sick). It was like I'd never noticed how green the grass was, never listened to the wind whistle through the pine tress, never saw how blue the sky was. Know that we are all here for you. I'll keep you in my prayers. Michelle

Thanks Steph and Nina! I know when I was first sick it felt so good to talk to others who could really understand. It still does. So thank you to everyone out there who offers their support and encouragement to others on this board. And thank you to seaboardbc and goldicedance for sponsoring this forum. Members like you, Steph and Nina, are what keep this board a positive and therapeutic place. I'm grateful to have you guys here. Thank you, Michelle

Steph, I'm about an hour from Dr. Grubb's office. I know a few of us that live in this area that would probably like to get together...we've done it in the past. Just let us know when you are in the area. That goes for any others of you out there too. Michelle

I've started to bruise a lot easier then I used to. I've been getting big, ugly bruises on my legs. I know the classical EDS can predispose to bruising...but I never had problems with this before. I'm going to ask my doc. Till then I'm going to join tearose and try to hide them with makeup. Michelle

We could have a pot luck...or even meet at a restaurant and let someone else do the cooking. (You might not want to eat my cooking...it can be scary ) Let me know if any of you out there would want to get together around the Michigan/Ohio area. I'd love to meet you guys! Michelle

BTW, we do have a place on DINET for pictures with our mascot, Bernie. If you haven't seen him, check him out: (he's really cute) http://www.dinet.org/mascot.htm He was donated to us by June Elaine Vogel to help raise money to fight dysautonomia. We'd love to have some of your pictures with Bernie! Michelle

Thanks Nina. You definitely deserve credit, too. You have been so helpful here on the forum and by answering emails. Your help is greatly appreciated. Thanks for all of the suggestions. There is so much I'd like to do to make the world better for all of us....sometimes I get frustrated that I can't do it overnight, or by myself for that matter. But I know most of you want to see things get better for patients as well. Together we can make change the world for dysautonomia patients. It can be done, but only if we do it together. Michelle

That is our plan, Merrill. We are working out the details. Michelle

I'd love to do it, but most days I am stressing over just paying for supplies, the website & forum. I really want to publish educational brochures written by a physician for physicians, but don't even have the money to do that. I have a great doctor who has POTS that is a medical advisor for us. He would be great to ask for help with brochures because he knows this stuff first-hand. I think physician education is of utmost importance. Anyhow, that is where I am going to put any extra money we have now...but unfortunately right now we don't even have the money for printing/mailing brochures. A conference would be wonderful and is something I have thought about for the furture. Maybe some day! Michelle

Hi Merrill, I was referring to when I'm standing up and everything around me goes black and I can hardly see and feel like I'm about to faint as blacking-out. Maybe graying-out is a better description... Whatever the proper term, it ain't pretty Michelle

Hi Geneva! I live in a small town too, and I have to drive an hour to the "local" health food store. I second the info above...the Internet is a great place to shop when you don't have a local health food store. One of my favorite places to buy snacks is www.justtomatoes.com. I'm addicted to the freeze-dried Strawberry 'n Bananas. Michelle

Your welcome, Louby. Glad I could help. Michelle

Hi Amy! Welcome to the board. POTS is an ever fluctuating illness. Some days some of us will have extrememly high heart rates, other days they are a bit lower. Sometimes my heart rate goes up very high and then comes down a little....especially if I begin walking or flexing my leg muscles. BTW, I've never fainted in my life either. I've blacked out many times and I know if I didn't sit down when it happened I probably would have fainted....but not everyone with POTS faints. I did have about 2 weeks, years ago, when my heart rates were completely normal. I guess I didn't have POTS then. Unfortunately this plateau of normalcy did not remain and I "got" POTS once again. I'll fill you in on a little something since you are just beginning your journey: Most every POTS specialist has their own spin to the disorder. If you read research publications you will find subtle disagreements and sometimes downright contradictory information. POTS is still not fully understood and therefore the definitions are still being worked out. I hope you can get to a specialist and be on your way to feeling better. Michelle

Hi Louby, I've been diagnosed with classical EDS (which includes types 1 & 2). Type 3 is one of the best types of EDS to have, if you have to have it. The only thing that seems to be worrisome to my doctor about my EDS is possible dilation of the ascending aorta. I had an ultrasound that showed everything is in good working order. I really don't worry about EDS at all. I look at it this way: This is something I've had since birth. I've lived with it this long, why worry now? You might want to get in touch with the people at www.ednf.org. They can probably send you some info that will put your mind at ease. Michelle

Hi Lisa, I know the DYNA group has information specifically geared toward schools. Debbie will help you out if you contact her. Their website is www.dynakids.org KAT, some drugs can cause symptoms of dysautonomia...but I'm not sure if marijuana can. The DYNA site might have info that can help you as well. Best wishes, Michelle

Congrats Sue! Michelle

A psychiatrist is supposed to help you feel better, not worse. Hope you can find someone who really does want to see you at your best and is willing to listen and work with you. Best wishes, Michelle

I wish you the best, Futurehope! I do hope they are willing and able to accomodate your needs. Michelle

This happens to me, too. It happens when I do a lot of lifting or bending over. I have to be careful when I brush my teeth because if I stay bent over the sink for any length of time I will start to get trembly. I have also noticed that the blood pools in my legs a lot more in this position, which makes me suspect that less blood is getting to my upper body and more catecholamines are being dumped into my system as a result (and maybe they are causing the trembles?). Michelle

Hi Beala, I haven't heard from too many people taking mestinon. Have you asked your son's doctor if it is ok to take at the time periods you mentioned? He might have some more ideas on dosing that would work better with your son's schedule. You might also want to post your question at the NDRF forum: http://www.ndrf.org/cgi-bin/Ultimate.cgi The Dysautonomia Youth Network is a good resource for kids. If you haven't contacted them already, their website is: www.dynakids.org I wish you the best, Michelle

I know what you mean, EM. When I am feeling bad it is the not knowing when/if I will feel better that is the worst part of it all. Fortunately the better days always do seem to come back for me. I pray they will also come back for you. You are a great imspiration here at the forum and I hope you feel better soon. Michelle

Has anyone found a heart rate watch that doesn't look like it came out of a bubble-gum machine? I went shopping for one recently and was quite disappointed with the ones available in some of the sports stores. Any suggestions? Michelle